We found out two weeks ago that my husband has high grade prostate cancer. He is 59. PSA 5.9. Gleason 4+5, 4+3 and 3+4. There was perineural invasion in one sample and intraductal in another. He has had an MRI and a CT scan, as well. He is scheduled for a bone scan next week. No prostate symptoms, though he has had some lower back pain in the last two months that we aren’t sure if it’s related, hence the bone scan.
We live in Canada. We are talking to his surgeon oncologist for the first time tomorrow. So far my husband’s GP and urologist don’t see the need for a PSMA scan. I am going to ask the oncologist about it tomorrow, but I don’t understand why you wouldn’t do it in a case like this? Everyone is saying the tests so far suggest the cancer is contained and surgery is the best option, but why wouldn’t you do a PSMA scan to confirm as best you can?
I would be interested in hearing about others people’s experiences in a case like this. What would be a reason to not do the PSMA scan? The urologist said you would do it after surgery if PSA starts rising - I get that. But with my husband’s high Gleason scores and other signs that show the cancer wants to spread, why wouldn’t they do it? I know we’re in Canada and it’s not widely available, but there is a private option close by.
Thank you!
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Hi, we are in Ontario. It's not standard procedure to do the PSMA scan first. You can pay for it, but even then, your husband has to meet certain criteria for them to do it. Usually it's bone scan, CT scan, MRI, then you decide on the treatment.
"Everyone is saying the tests so far suggest the cancer is contained and surgery is the best option, but why wouldn’t you do a PSMA scan to confirm as best you can?"
The bone scan/CT may show distant metastases. If not, you are right that a PSMA PET scan is needed before proceeding.
If both are clear. The therapy with the greatest odds of success is "brachy boost therapy." That entails whole pelvic external beam therapy with a brachytherapy boost to the prostate plus a year of hormone therapy:
very good response. I was in almost identical situation at age 50 brachy boost was brand new then and controversial It gave me an 18 year remission without complications of surgery and ADT preserving quality of life for those years
I choose surgery over brachy based on mpMRI details of tumor location, no unmanageable complications and improved flow with removal of enlarged prostte. Fortunately men have many options.
Wow, that’s amazing! I’m happy for you. What was your Gleason score going into treatment? Did you have any material side effects from the treatment right after surgery and over the years? Was your cancer localized at the time of treatment? Thank you for sharing whatever you feel comfortable sharing!
Gleason was 7. Stage t2b. Perineural invasion. No significant long term side effects. Bowell bladder and sexual function not affected. Short term. Fatigue.needed afternoon nap Diminished appetite Some mild rectal and bladder irritation. Was on flomax for several months
External beam therapy now is much more precise and well modulated
At the time i was treated the two year progression free survival rate for surgical patients with Gleason 7 was less than three years. The published survival curve for the radiotherapy treatment years longer.
Thank you for this information. I think we both jumped immediately to “just get it out”, but when I read about how high the recurrence rates are with high grade PC I think it makes sense to do more research to see which treatment has the best results with reducing recurrence. Are you able to recommend any further readings or resources on this and perhaps studies that compare RP to brachytherapy boost in high risk patients?
One thing the surgeon mentioned is you can always do radiation after surgery, but you can’t do surgery after radiation. That seems a bit concerning, but I guess if there are clear studies that show the recurrence risk with brachytherapy is materially lower than maybe that becomes less of a concern.
Did you look at the article I linked? it's about the best study to date.
The surgeon's remark was misleading. Yes, it's true that it's a bad idea to do surgery after radiation, but there are many other salvage therapies that may be curative, but without onerous side effects:
But I agree with you that with 87% free of metastases at 10 years, salvage is seldom a concern. (Only 54% were free of metastases after surgery, even with almost half of post-prostatectomy men getting salvage radiation) .
I did look at the article, thank you. I have been googling tonight and have watched a numbers of videos and read other articles as well. It definitely seems like an option to consider. We’re going to see if we can get a quick referral to Dr Keyes. I think my husband is getting anxious with the waits required at every step, so I’m hoping it won’t take too long to get an opportunity to talk to her.
Be careful with youtube videos - the info isn't always accurate. Patients often get into trouble with Dr Google because they don't know how to evaluate evidence.
If he gets a hormone shot, the cancer will not progress. He can do that as soon as his imaging is done.
Urologists/surgeons make their living performing surgeries. Surgery is the most invasive option with the greatest risk for nasty quality of life impairment. Maybe consider reading Dr Scholz' book "Invasion of the Prostate Snatchers". You will also find many helpful videos by him and the PCRI on youtube. He is a highly respected doctor.
The GP doesn't have established any sort of "interest" with the imaging lab (is kickback the proper term?), so no motivation for referral. The urologist faces a conflict of interest. If the PSMA scan detects distant metastases there will be a preferential shift from surgery (RP) to radiation treatment.
Wow! That is a very negative view of the world. As a physician a met physicians like that but most physicians are trying to do their best by patients. They may not always be the smartest but a blatant decision to not do a test because you would lose business would be very uncommon. In this case I think Canada makes it hard to do because of cost. We don’t agree with their decision but it is not about greed.
AI wasn't generalising, but it is a real word probability. 5 years ago I asked an urologist with the leading cancer hospital the same question. His response was: "The public health system will not approve it for you, you will have to go privately. In your case (I was treatment naive then with a PSA of 7,x) the sensitivity of the test 60%. If you think it will be worthy, you can go ahead". After serious thoughts I decided not to take the test.
Yes he did it because that was the truth. Not because it would affect him financially. Especially in the beginning they were very tight with insurance approvals of this test. My point was that most physicians enjoying helping people.
if they decide to do a surgery then if the psa rises then they will do psma test because even there is a metastasis can be found with bone test trust the doctors,
i have advanced prostate cancer and i am under chemical castration now it's 11 years after surgery , relax today they have a lot medications for it because pc is increased so pharma see a opportunity to make money
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Please take a look at my Profile; my diagnosis is similar to your husbands but I had one suspect node in the pelvis. Due to this I chose HDR Brachytherapy, External beam radiation all along with Lupron and Zytiga. I would recommend getting genetic testing done as well. I wish you well in making your treatment decisions. Please reachout if I can help.
Genomic testing of biopsy samples was very useful for me as well . I did the Genomic OncotypeDX - not covered by private insurance eight years ago - generally is now. Blood biopsies are another investigative consideration - not yet common in practice; US Medicare did pay for mine.
Did knowing the outcome of the testing influence your treatment? My husband was invited to a clinical trial yesterday which involves doing genetic testing and then applying different treatments arms depending on the outcome. It requires delaying surgery six months though, to start the drug treatments. We’re agonizing over the all the choices we need to make for treatment.
Absolutely, the multiple investigative methods I had before my three treatments, which indeed caused worrisome delays, influenced my decisions (note I did not have genetic testing). Sharing a lengthly reply in hope my experiences and lessons are helpful. Upon my diagnosis I was offered surgery - the very next week. Scared, I said no and went to Europe to investigate non-surgical treatment methods not available at that time in US (nine years ago). From the finding of the lesion by DRE it took me 13 months to settle on surgery. In that time, I had two mpMRIs, one at home in Texas, the second, a 'better one', in London. I then had 2nd and 3rd opinions of my biopsy findings - my initial Gleason score was 3+3, second and third opinions 3+4. I also had genomic testing and many consultations covering many treatment options. After my RP my usPSA nadir was 0.050; as we were relying on <0.010 as best indicator (well below guidelines) we accepted my cancer had spread outside of the gland. Certainly, the question can be raised, did my year to decide allow for the cancer to break out? I then took 11 months to decide what to do next. The only investigation I did was monthly usPSA testing, as I watched my usPSA rise from 0.050 to 0.11. I was hoping for imaging but could not 'qualify' for a PSMA trial and insurance would not support me having fluciclovine nor choline PETs (looking back I wish I had self paid). Without imaging, and not wanting ADT/chemo, I tried salvage RT to the prostate bed (I did not want to risk side-effects having RT to the whole pelvic region without evidence of cancer). Well, my post salvage RT nadir was 0.075 - so once again we missed as cancer had spread further than thought. ADT and chemo were again recommended. I decided not yet and continued monthly usPSA testing, while contemplating ADT/chemo, again watching my usPSA slowly rise up to 0.11. I also did extensive research and networking and became aware of readily available PSMA PET imaging in Europe and even better Ferrotran nanoparticle MRI (it was in trial). So, I went to Europe and had both. Although the PSMA was clear the nanoMRI identified five suspicious pelvic lymph nodes. Fortunately, thankfully, there was NED in bones or organs. Back in US, recommendations from multiple centers was still ADT/chemo. I kept researching and found my way to salvage extended pelvic lymph node surgery in Belgium (could not find a US center to do this). The ePLND yielded an usPSA nadir of <0.010. Six years later, I am most grateful my usPSA is holding very low stable 0.03X range, still no ADT/chemo. My new focus is on (theoretically) fighting remaining cancer stem cells. The big question - did my one year delay to my first treatment result in my cancer getting out? And did my delay of salvage RT allow it to spread further? There is just no way to absolutely answer this - but my sense is no, it was already out and spreading; fortunately, slowly and not to my bones nor organs. My focus since the diagnosis, which included the likely of spread, has been and continues to be to defer ADT/chemo as long as possible, thereby hopefully further delaying castration resistance. I hope this helps. All the best!
Thank you so much for your lengthy reply. The stories people share about their experiences are helpful. I am impressed with the amount of research you have done. I haven’t even heard about a lot of these therapies, though we are only three weeks into this since we got the official diagnosis. I keep reading about castration resistance. Is that something that happens with all prostate cancers eventually, when you go on hormone therapy? Is this the cancer cells adapting to get around needing testosterone to survive?
As I do not face castration resistance, and as one of the HU guidelines is to speak from one's own experiences, I will mostly defer to others to comment. This said, yes it is my understanding CR should be seen as inevitable as cancer does morph, but, wonderfully, lots of men report many many successful years not having to face it.
A few other questions popped into mind…what is the difference between genomic testing and genetic testing? If you did have biomarkers for genes linked to prostate cancer, were there drugs available outside of trials that were available to you? We live in Canada, so it may be different for us here than in the US. Also, was treatment in Europe very expensive? I can imagine it wouldn’t be inexpensive!
I found all the costs I had in Europe to be less than high end luxury cruises, and much less than the brand new Corvette I wanted for retirement. As for the drugs, again, my wish is to push these way out. I do read a lot, and learning about them is a big reason I am following many in HU - to be better prepared. Yes, genomic and genetic are different. My genomic testing was of my biopsy samples to further determine risks. IMO this is a good public simpler explanation doc - verywellhealth.com/what-gen...
"why wouldn’t they do it?" All too often docs are constrained by 'insurance' restrictions, availability, medical (supplier) contracts, practice guidelines and own biases. I have experienced this in US and seen it in other countries. Proponents for both mpMRI and PSMA before treatment decision are increasing, however, so many constraints. Six years ago, I traveled to Europe and self-paid for PSMA and MRI - proved to be the right decision for me. Hope this helps. All the best!
We paid for our PSMA PET scan. In Australia was $700 in 2017. Now covered by our Medicare I believe. If you are not covered by insurance then maybe a big investment in Canada or US. Was worth it for us. High Gleason is very, very dangerous. Radiation was our best option and 7 years later he is fit and healthy at 78.
I was diagnosed 2-1/2 years ago. PSA was 6.4, main tumor Gleason 9, 5+4; two others 4+4 and 4+3. Had Bone scan, CT, MRI (in bore) in that order and then PSMA to rule out spread. I listened to presentation from VERY experienced surgeon - could not be hopeful on nerve sparing technique so I decided to join a clinical trial at UTSW in Dallas. Trial was Lupron, Zytiga+prednisone, Naraparib for 6 months, adding 5 sessions of SBRT over a 2 week period to include pelvic lymph. Finished drug regimen 8-31-22. PSA at conclusion was <.01. Testerone recovered over next 12 months while PSA rose to flat trend line at .09. RO told me we would see PSA bump at 18 months following treatment- he was right - bumped to 0.22 in December of 2023, then back down to .08 in March of this year. The trial I am in (ASCLEPLuS) has 4 location - primary is Rogel Cancer Center at University of Michigan. Sorry for length - think thru offered solutions- in my experience, most GPs and urologists don't understand the pinpoint accuracy of current SBRT treatment at Centers of Excellence. All the best
The SOC (standard of care) today should include a PSMA PET before proceeding with any treatment. If the PCa (prostate cancer) has spread outside the gland surgery is not an option. Standard scans are not as good at detecting this as PSMA PET...so, why are they not doing this first. If I was your husband I would get this scan before proceeding...his PSA is high enough to push the sensitivity (odds of finding a tumor) well above 50-50...specificity (odds that tumor found is prostate cancer) for PSMA PET is over 90%...so why on earth would I not get this scan? In my PCa journey I have had to push and cajole and convince and sometimes search for a way to get my testing done. Doctors just dont want to step outside their 'comfort zones' and the old saying is true; 'It takes 50 years to get a bad idea out of medicine and 100 to get a good one introduced.' So, dont take NO for an answer! I would get this scan before they did any treatment on me...that is what I insisted on before I proceeded with RT (radiation) and even my RO was pleased I did...
Here is the latest NIH article on this issue; the RESULTS makes my point...
RESULTS: " However, costs for an accurate diagnosis using PSMA PET/CT seemed reasonably low compared to the potential consequential costs of an inaccurate diagnosis."
PS the wacko costs shown for the USA are 'insurance' driven...I have found that the 'cash' cost is always much lower...so look at all angles...even traveling to get this scan if costs are an issue...TNX
Here is what I wrote about this issue as it affected me...good luck. Rick
...you know what? My cell phone costs $1500 and I saw a BBQ grill today for $950...I could go on. Sometimes we look at medicine and for some reason think it should be free, or almost free, but things cost a lot. I say $3500 is a great price for this scan.
In 2020 when I was scanned I was going to pay UCLA in L.A. $2650 out of pocket for my PSMA PET Ga scan until I was told my insurance company covered the scan; problem in Jan 20 was that it was so new in the USA there was no 'procedure code,' against which insurance could charge...so initially I was denied and thought I needed to pay cash. Needless to say I was so happy. (What I am about to tell you next is the honest of God's truth).
I got my insurance explanation of benefits. For the same scan UCLA charged and was paid $26,464 and my out of pocket cost was $2850...sooooooooooooo the medical center was able to charge the insurance company TEN TIMES the amount I was happy to pay and they were happy to receive. I have seen this type of 'price adjustment' happen repeatedly my whole life as I was self employed and had to pay out of pocket for many things. So, $3500 is a good price for this scan, being its now 4 years later.
The scan is very important and at the PSA you are dealing with the sensitivity of the scan is very high...here is what my Ai engine tells me;
Q: What is accuracy for the PSMA PET at PSA of 5.9?
A: According to the information provided, the sensitivity rates of PSMA PET/CT according to PSA levels are 55-60% for PSA levels of 0.2-0.5 ng/mL, 72-75% for PSA levels of 0.5-1.0 ng/mL, 93% for PSA levels of 1.0-2.0 ng/mL, and 97% for PSA levels ≥2.0 ng/mL. 1
Given that a PSA level of 5.9 falls well above the highest provided range (≥2.0 ng/mL), one might expect the sensitivity to be at least 97% or potentially higher, although the exact sensitivity for a PSA level of 5.9 is not explicitly provided. The specificity of PSMA PET for detecting prostate cancer is generally very high, with the article mentioning a specificity of 99.1% in a certain context, 1, , but it does not directly link this specificity to a specific PSA level range.
But, there is still a chance that the scan will show nothing...it happens. In that case its not necessarily good news as PSA is still present. But in this specific case I hope it shows nothing outside the Prostate, then you can focus on surgery and a possible cure from that one treatment...if it did show a tumor then surgery would have been pointless!!! PSMA PET is the SOC today before any treatment should be done...meanwhile, here is a good article on pMRI and bone scans...they still have their place...good luck. Rick
Thank you so much for the info. I had no hesitation on the cost; it’s a life vs money. Not even a question for me at this cost. My husband was the one who was worrying about it. I feel very fortunate to live in a city that we can access it and to have the means to do so. I know a lot of people don’t.
I fully agree PSMA should be SOC before treatment decision(s) and that we must be strong self-advocates, realizing many doc's are influenced by volume and contracting incentives, and volume -vs- value based care economic incentives. As I have shared extensively, I strongly disagree surgery is not an option once the cancer is out of the gland; as I have had it twice to defer ADT/chemo and CR as long as possible.
If there is any chance of having the test covered by your public insurance, you can mention that, in the USA, Medicare definitely pays for the test for high risk Gleason 4+5 patients...and the detection rate should be very high for a 5.9 PSA!!!!!
The "bible" here for MDs who treat cancer is the NCCN guidelines, and that test is advised for men such as your hubby!! A study of the test in real patient populations has found that the results change the treatment plan for 30% of patients...thus, a very valuable test!!!!!!!!!!!!!!!!!!
There is a PSMA scan available at our local cancer agency, but it is used for trials mostly and some high risk patients. The wait list is 6-9 months, which makes it useless for us at this stage, unfortunately.
Back when I was diagnosed in mid-2018, my initial RO at University of Florida was evaluating me for radiation. He wanted to run an Axumin PET scan, but said he doubted my private insurance would pre-approve it.
Well, my insurance did pre-approve it, but then, amazingly, the University of Florida's internal guidelines kicked it back and made us run a PET Bone Scan instead.
Very curious. I've heard explanations of why this phenomenon occurs, and supposedly it has to do with the individual deals each clinic cuts with each medical insurance carrier, or even with Medicare. They may make money on certain procedures, but little or even a loss on others, depending on frequency, newness, cost, etc.
Anyone heard explanations similar to this? I notice curious resistance sometimes from docs even on cheap individual blood tests.
I did have an Axumin a year later; now I've had several. Hopefully I can add a PSMA to my trophy case this year.
Good your dear Hubby is getting the test....... He needs to give you tons of kisses (also a evening dinner out at Costco).... Remind him, that you're the boss and he's the horse...
i agree you need to push for the scan. no expert but my husband was similar and at Memorial Sloan, they did the PSMA after clear bone scan and before surgery. not to sound cynical but I do think there are doctors that push for their "specialty" to be the answer. good luck
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